Never Enough

It’s with the strike of a match a blaze of emotion is sparked and dares to undermine the strong will that sets my spirit. As each candle is lit, I see an unmistakable glow flourish in the eyes of those surrounding me. I cannot help but realize the vibrant glow gleaming in their eyes is but a reflection of my own life – its vibrancy, its unpredictable nature, and its unrelenting pursuit to be a light amidst darkness. A glow that with every passing year I want nothing more than to hold onto - to be the unrelenting fire that reflects the untamable life and drive that truly burns vibrantly within every breath.

One More

My 30^th birthday was met with an unmistakable weight within my chest – an awareness of the past weeks’ uncertainties with CF, unanswered questions, and most of all, a deepening realization of what this life truly signifies and the deep gratitude I have for the people I am given the chance to love. I cannot help but think no matter the number of years I am given they will never seem like enough. If anything, the magnitude of losing it all only grows. That the fire that burns within me to truly live will never dissipate but only burn more passionately - always wanting just one more day. One more year. One more breath.

As I felt the air pour into the depths of my lungs in hopes of blowing out every last candle, I couldn’t help but be wholly grateful. I knew this moment in many ways should have never been, and in my heart I knew tomorrow would never be guaranteed. In the reflection of the candles’ glow I not only saw myself but everyone in my life who had fought selflessly and tirelessly for me to be given the chance to celebrate this day – my friends, family, selfless strangers, doctors, nurses, pharmacists, and everyone a part of my CF Care Team.

Unrelenting

As I blew each candle out, billows of their existence swirled amidst the air - a reminder of each candle’s lingering presence even after its glowing flame had been stifled. But, there were several candles that forbid to be extinguished – blown out only to vigorously reignite in an unrelenting glow. Trick candles - an innocent mistake but more perfect than ever could be realized. As the candles forbid to go out, I too forbid to let the blazing fire within me be suffocated - especially by CF. May the fire within me will only burn brighter because of it – casting a powerful glow of hope onto every beautiful breath I am given.

I held back tears as my heart filled with the deepest gratitude for this life I’ve been given, the people that ignite my soul, and every breath that renews the glowing embers within me. I will take every beautiful day, hour, moment as they are so graciously given to me - always sharing the vibrant emblazoned life that passionately burns within me. Here’s to the past 30 years and to the endless hope for 30 more. Thank you to everyone who helped make my birthday so special and for most of all, being such an influential part of what makes the fire within me burn so brightly. Love to you all. 

Let the fire that lives within you burn brightly today and every day you are given.

Impossible Firsts

I remember the first night I was alone in a hospital room around the age of seven. I remember crying myself to sleep and begging my mom not to leave. I remember blood draws, failed IV starts, and the feeling of the cold vinyl against my skin as I lie against the sterile exam table. I remember counting the ceiling tiles and listening to the sound of my own breathing - something I still do. I remember the feeling of the unwelcoming cold tile floor barren below my feet in my hospital room shower.  I remember the whooshing and clicking sound the door made as it closed and opened.

I remember the first time I told Mark about CF and the ceaseless determination in his eyes. I remember the first time I coughed up blood and the terror that pierced through my body. I remember for the first time being truly terrified of the power of CF and the destruction it could cause. I remember the first time realizing my lungs were starving for air. I remember the first time the words “lung transplant” were said to me and the burning disbelief that such words were possible. I remember the first blog post I ever wrote and the life-changing truth that filled each sentence.

My life is filled with many painful firsts that have molded me into the person I am today. But my life is also filled with the most beautiful of firsts:

Beautiful Firsts 

I remember my first slumber party. I remember my first day of kindergarten and climbing the three big steps onto the school bus. I remember the first time I jumped off a diving board and rode a bike without training wheels. I remember my first voice lesson and the first notes I played on my piano.

I remember my first kiss. I remember the first time I stood on the stage on opening night. I remember driving my first car and learning how to drive a 5-speed. I remember my first prom and the best friend that made the night so memorable. I remember saying my first real goodbyes to friends as we graduated from high school. I remember the first time I said, “I love you” and the butterflies that filled my stomach.

I remember looking at my first apartment. I remember my first conversation with my college roommate and the way of her smile and how it created a crease at the corners of her eyes. I remember my first day of college. I remember my first time in Paris and eating jambon et fromage baguettes on the street. I remember tasting my first alcohol and the morning after. I remember my first week of finals and my first spring on campus.

I remember looking down for the first time at my left hand and the sight of my engagement ring. I remember the first time I saw Mark on our wedding day and the color of his eyes. I remember the first dance at our wedding. I remember buying our first house and the beautiful dreams that awaited. I remember bringing our first dog, Cooper, home and making us a family.  

This beautiful list could endlessly go on. In all honesty, though, would all these firsts look as sweet to me if not for CF? While my life is filled with many beautiful and heartbreaking firsts, the most beautiful thing of all is that I can share them with you. By all odds I shouldn’t be here and by all odds I shouldn’t be breathing. By all odds CF should have stolen every last beautiful breath long ago, along with so many firsts. But it hasn’t. 

Because of you

I owe each of these firsts to you. No, really. I am here because of you. I am here because you weren’t willing to give up. I am here because you believed in this fight and the beauty in every breath. Does that mean there aren’t difficult days ahead? Of course, not, but we continue to press on with unfaltering hope for the opportunity to create more beautiful and memorable firsts. While I have lived a life filled with the most incredible of moments, there is so much life I have yet to live.  I am here because of your support, and the life-saving drugs and therapies developed by the Cystic Fibrosis Foundation. Without their relentless drive to research and drug development, many of us would not be here today. But what’s the most humbling part of each life-extending drug I take? None of them would be possible without you. Truly.

More Impossible Firsts
So I ask you from the bottom of my heart and from the depths of my scar ridden lungs to join me in the relentless pursuit for more beautiful days filled with impossible firsts. We are so very close to a cure but we are not there yet. Continue this fight not for me but for the parents, families, and friends who yearn to celebrate so many firsts and beautiful moments with their loved one with CF. 

Walk with me for Team Ashley in Great Strides for CF on June 4, or find a Great Strides/team to support in your city! Show your support not for me, but for all those whose lives have been touched by CF. Love to you all.

Sign up or donate 

to Team Ashley:

 http://fightcf.cff.org/site/TR/GreatStrides/80_Minnesota_Minneapolis?pg=team&fr_id=4825&team_id=50338

Team Ashley

Great Strides for CF - Cystic Fibrosis Foundation

Saturday, June 4, 2016

10 a.m.

Spencer Park . Sioux Falls, SD

Help be a part of a beautiful future filled with so many firsts. 

Please note that donations made to Team Ashley go to The Cystic Fibrosis Foundation.

Champagne Bubbles & Birthdays

Photo by Maren Engel

I stare into my glass of champagne and watch it freely bubble with life as the song "Happy Birthday" dances upon my ears. I wonder if those most comforting and familiar voices that surround me know the weight of such a simple song. With every note I feel the ever present dull ache in the pit of my stomach begin to stir ferociously. With every breath I can feel its stirring panic intensify - bubbling up with every breath of air I graciously give back to the world that lent me the last. For a moment I am lost within myself - immersed within the champagne bubbles that yearn to kiss the air. As I feel that aching stir threaten to overwhelm me, I fight back the tears that brim my eyes. 

Another

I catch Mark's smile reflecting in my glass of champagne. His laugh dancing within each bubble. The dull ache inside of me growing. I wonder if Mark, too, feels that same unspoken dull ache within. That stirring unease about the passing of time and the celebrating of birthdays. I am careful not to look at Mark as I know he'd be able to see the well of emotion and desperation restlessly stirring behind my telling eyes. The desperation to live. The desperation for one more day. The desperation to stop time. I fiercely try and grip life within my salt stained fingers - to hold on to another moment, another day, another year, another birthday, another breath. 

Tears threaten to interrupt the final notes of "Happy Birthday" as each voice moves through me, embracing me with reassuring comfort. Within every stifled tear a moment etched in my memory and on my heart. Each a reminder that this life I live is filled with such goodness. A life I wouldn't trade for anything. That dull ache of stirring panic only combatted by the deepest gratitude that accompanies every breath I take and the deep love I have for the people that fill this life. What I wouldn't give to hold onto this moment forever. 

To 29

This last year has been one I will never forget - in so many respects. Through the very best of days to the most heart breaking I've embraced every moment. I've embraced this life with CF and all that it means. Every single one of those experiences bringing me to today - a place filled with such meaning, so many incredible people, the deepest of relationships, and the truest of honesties. My 28th year was like that of a beautiful bottle of champagne - bursting with life and fullness - more priceless than I could have ever imagined. Yes, every bottle of opened champagne goes flat at some point no matter the cost. But the dancing bubbles do not lose their excitement to kiss the air, they are simply set free, never once looking back from the bottle that used to confine them.

Photo by Jayna Fitzsimmons

Tear off the foil and pop the cork. 

Here's to year 29.

To never looking back. 

To embracing every beautiful breath that I am given - whatever the days graciously bring. 

To honesty. 

To sharing endless love and gratitude with the incredible people that fill my life.

Here's to truly living. With such love to you all. 

Cheers! Pour yourself some champagne and set those bubbles free. 

Living

The most beautiful moments in life come from taking risks, making every breath count, and choosing to live.  I mean really live.  To be present in every moment.  To feel: love, pain, heartache, joy, gratitude. To feel: everything.

As I stare into the candles that cast a beautiful glow upon my cake, I think about what they really mean.  As I take a moment and look around at the people I love next to me, I can't help but wish to stop time for just a moment: to imprint the feeling of this very moment forever into my memory.  I look back at the candles flickering on the cake and and am weighed by the meaning of this birthday and all it represents.   Meaning for the past, the present, and the future.  It represents life and every moment I've been so graciously given, and every moment I have yet to be gifted.

Endless Hope
For a moment I didn't want to blow out the candles.  I wanted to bask in the glow of their hope and the gracious gift that I had been given yet another birthday.  I just wanted to exist and be thankful for being allowed this very moment, for all the people in my life, and how completely beautiful it all was.   But I knew that taking in that breath and blowing out those candles also represented another day CF had not won.  It represented the beauty of tomorrow, my next birthday, and the hope that can never be extinguished.

It would be an understatement to say that I have been overwhelmed with emotion these past few weeks.  The fragility of life, the incredible love, generosity, and support of so many amazing people, the realities of CF, decisions about the future, and such immeasurable goodness amidst uncertainty have all sent endless tears streaming down my cheeks.  These past few weeks have proven themselves to be stronger than my ability to contain my emotions: leaving me to feel every moment, relive every memory, and whole-heartedly give thanks for the beauty and people life has given me.  I have been gifted beyond measure with such beauty and goodness.

A Box of Good
For my birthday I received a box from a dear friend.  In that box contained dozens and dozens of envelopes.  But really, it contained so much more: it wasn't just a box of birthday greetings, it was a box of genuine selflessness and complete beauty.  It was a box of life and a celebration of every beautiful person that makes my life so incredibly amazing.  The morning of my birthday I opened the box and took out the first card.  I read it, only to put the lid back on and be overcome with humbling tears.  Tears for the past, the present, the future: all of them rooted in gratitude.  How did I deserve such goodness?  Have I shared any good?


Days later, I have finally opened the last card: no tears, just a deep love for life and the people I am so incredibly lucky to know.  Laughter filled my lungs and an inner smile was imprinted on my heart.  I have been gifted beyond belief.  The candles on my cake represent the life I have lived and the life I have yet to live: all a beautiful gift.  They are all filled with immense hope and goodness.  Each day I am stronger, more grateful, and filled with more love.  Thank you from the bottom of my heart to all who celebrated with me near and far: it will be a birthday that will live with me always.

A most special "Happy Birthday" from the wonderful South Dakota Chorale

Here is to a beautiful year 28.  I promise to live in each moment, be present in every beautiful breath gifted to me, and most of all, be grateful for it all.  I will truly live.  Love to you all.


Are you living? I mean really living?

Cake & Candles

Birthdays, I love to celebrate them.  Wait, let me clarify: I love to celebrate your birthday.  I love to find something special just for you: to tell you how happy I am that you were born!  I love to celebrate a day dedicated to you!

Cooper's 6th birthday 4/2O

However, when my own birthday rolls around on the calendar I feel very differently.  [No, it's not my birthday: not until December, whew!] I truly wish it were a day that would come and go just like any other.  Why you ask?  To me, the date means so many different things.  First it means, "oh my God,  I made it another year.  I made it to be 27!"  Second it means, "Oh, my God, I am already 27, how did it go by so quickly?"

Panic
I then start to have a sense of panic.  I panic that my life is quickly slipping away, like I am watching sands in an hour glass run out.  Each birthday is usually met with quiet tears and the questions:
"Did I make enough of this year?" "Did I really live?"  "Can I hold time in my hands just for an extra moment?"


The number 37.4 [life expectancy for someone with CF] haunts every one of my birthdays.  Sure, people live beyond that, but a great many never make it to celebrate that number as well.  Most people with CF die from lung complications, primarily respiratory failure.

How can I put as much life as I possibly can into every day?  How can I experience everything?

The hardest part of celebrating another year is seeing what CF has done to my body in that last year.  I think about what I felt like 2 years ago, 5 years ago, or even 1O years ago and wish I had those lungs.  I wish I would have done more with them when I had the chance.  I wish I would have squeezed more life out of every breath.

Ticking
Every birthday causes me to ask myself: "what have I done with my life?"

3rd birthday - Always with a DQ cake.

All those moments I took for granted give me a sense of regret, thinking I could have lived more within those moments.  I then feel urgency to live as much as possible right now.  I jump to take every opportunity, invitation, and experience. Why? Because in the back of my mind I hear a ticking:  the subtile steady ticking of a clock, asking me if I lived each minute to its fullest and reminding me of the hour glass that is my life.  With every birthday the ticking of the clock seems gets louder.

Grateful
I am grateful for each birthday.  I am grateful to be 27.  I am just selfish and want 27 more.  I am grateful for every chaotic filled minute, every opportunity, every relationship, and every breath granted to me.  I will gratefully blow out those candles with every breath I am given, regardless of how many candles are on the cake.  Thank you to everyone who fills each one of my moments with such goodness! Love to you all.



Have you lived today?